The realities

Yesterday, I was reading about when was it time to talk about caregiver burnout over at Lexistential.

Yesterday, I also sent Maura off to school with a “good luck, she’s been mood swinging all four-day weekend”, and got a “Wow, if today’s any indication of how you’re weekend went, I am so sorry! It must be hormones!” note from Maura’s teacher. I did manage to get Maura settled down with her brothers so that the teen girl and I could slip out and go to a “meet the author” thing. We had a blast, singing in the car, taking selfies while waiting to meet the writer, making a “late” night food run on our way home.

But then we got home. And I found Maura, at 10 pm, still awake in her room with her iPad, looking a bit cross-eyed because omgshecouldn’tputdownthecrackpad. And there was a smell of poo lingering faintly in the air. And mascara smudged across her face because she decided to mimic her sister, putting on make up and trying on clothes.

There was a trial of Hurricane Maura through the house. I went to go yell at the teen boys about watching their sister better, and they just looked at me. And I looked at them. And I walked away.

Because I realized – sometimes, it’s all just too much.

So I went to bed, knowing that thanks to Maura being awake at 10 pm, at 7 am, she’d be difficult. That her whole day could be thrown off. But in order for me to sneak out with one of the teens, it required the others to pick up the slack. And they were doing their best probably, but then poo got involved and let’s face it, at that point, even the parental units start looking for the quickest escape route.

And somehow, this has become the norm – if I’m not there to hover over Maura 24/7, then I know that I may come home to something that needs taking care of – crayon on the walls, poo on the bathroom floor, a girl who really can’t handle mascara. And I will take every fall possible if it helps me make sure my older three have a few moments of normal life fun.

This is my life. These are my realities. And this? This was a good day. Just a couple moody meltdowns that were easily fixed, but otherwise, it was a good day, poo and all.

The thing is, most of us in similar boats don’t talk about it. We don’t talk enough about how much of a caregiver we are. We don’t speak of how much we sacrifice personally because we’re taking care of this extra-special person, while trying to juggle normal lives for the rest of our families. And if we do bring up something like poo, we’re greeted with “OMG! TMI!” If we mention we’re exhausted, we’re told “You need a break.”

Yes. Yes we do need a break. But we need you to laugh at our poo stories as well. Because poo is a reality, getting a break is a dream. And if you don’t listen to the poo stories, you can’t really understand just why we need a break. And honestly, sometimes we don’t need a break, we just need a friend to laugh at our poo stories. Because if you make the “Ew! TMI!” face at us, then we realize that what we’re dealing with on a daily basis…is kind of gross. And that’s disheartening. It just adds another scoop of sadness onto our crap sundae.

And it’s all exhausting. So by bedtime, I’m ready to just become a zombie. If dishes don’t get done, so be it. If there’s a pile of (clean) laundry on the couch, I don’t care. It’s 9 pm, and I’ve clocked out for the evening. Because I’ve spent half my day running around trying to do stuff while Maura’s at school, and the other half wrangling the girl herself.

Girl Wrangling includes things like arguing over computers, tablets, and tvs (she wants to use them all, all the time), having her help me clean the pencil scribbles off the wall, spending five minutes convincing her she must brush her teeth and cornering her in the bathroom until she finally, happily, brushes her teeth, sitting in the hall while waiting for her to use the toilet, cleaning poopy underwear, trying a new way of organizing her room so that this time, maybe, she won’t dump everything out, keeping her from killing herself accidentally because she thinks she can use the biggest knife in the kitchen to cut stuff or make her own toast, running as soon as I hear a strange noise because it could be something like her deciding to make popcorn on the stove, or she dropped a glass, realizing that it’s quiet…too quiet…not being able to fall asleep until I know she’s asleep, watching Mulan every damn day until even the teens are singing “I’ll Make a Man Out of You”, chewing obnoxiously, helping her bathe (which means I get a shower and my clothes washed at the same time!), dealing with a sudden-onset mood swing because her brother blinked incorrectly, did I mention poo?, having her follow me around the house as I look for her shoes instead of just staying where I asked her to stay, fighting with her about clothes (okay, that’s probably a normal thing), letting her “help” me or do it herself even though it means making the task 29438 times longer, hiding certain things (because no one should eat 8 granola bars in a row), and whatever else she throws my way.

Luckily, she has such a good attitude most times that when I do clean her room, it’s met with “WOW!”, when we do a task together, there’s high fives, when we do agree on clothing, there’s girlish preening, and just because she loves us, there’s lots of hugs and kisses.

But it is still exhausting. And it’s all the time. It’s our reality, and while we don’t complain about it much, it is there, eeking away at us. We’ll have our moments, and we’ve earned them. We’ve had our days, and we’ve earned those as well. And we’ll be doing this for the rest of our lives, because the other options are too hard to think of.

We caregiving parents put up with all of the trials and the traumas because that’s the only viable option given to us. Anything else will just break our hearts. Because as much as that special person drives us up walls and across ceilings, we love them, and we want what’s best for them. And we know that others may not treat them well or lovingly. So we keep caring, and giving, and parenting.

The least everyone else could do is listen to our stories, TMI or not. Because sometimes, telling that story is the closest thing to a break we’ll be getting all week.

Oh yes, I totally get ALL of that! Well, I guess not the arguing about anything part since my son is non-verbal, but much of it is the same. That’s why I really value the little time I spend with other special needs moms – because we all “get” the poo stories and we all know how to laugh about them!

It does make life a whole lot harder when you don’t feel like you can share the reality of it with others because it’s “too difficult” for them to hear. I figure though that you are the one having to actually deal with the situation so if people cared they would take the time to listen to your story. While my life is nowhere near as exhausting and stressful as yours at this moment, I’ve had a close relative in my life who required a great deal of emotional energy to cope with due to her serious mental illness. There would be times when her behaviour to me would have me close to desperation. But bringing the details up in conversation with others appeared to be a complete “no-no”. We need an outlet for our feelings in order to continue coping. I hope that being able to share your experiences in your blog helps you to have some release. You may love a child or other relative to bits but that doesn’t mean it’s easy to cope with their very challenging behaviours. Talk about poo as much as you like! Sending you big hugs. You are amazing.

Have you considered telling folks what’s going on or that you need help? There’s a pretty good chance people will step up to help.

My youngest has had two long-ish in-patient stays and I’ve been blown away (and so very grateful for) the million casseroles and offers to care for my older girl. It’s exactly the sort of help offered to the family of a kid who has cancer, broke a leg, etc.

(Severe mental illness runs in my family – my baby sister’s home away from home was the friendly, local pediatric psych unit until she graduated high school. The same one that treats my girlie. Family/friends were equally supportive / helpful when my sis was in-patient).

Well, obviously, since I blog about it and post it on Facebook, and post even more to friends, and talk about it with my friends (if you can’t tell, I am kinda open about these things, lol) – yes, people are aware.

But we live far away from any family. Many of my very good friends also live far away. My very good friends here work during the day plus have their own kids and lives (trust me, they are there for me when I need it.) And honestly, I am bad at asking for help. Because it does take a special person to deal with a special kid, and honestly, how many friends are going to come over to bathe your child for you? I’m way past casseroles (which I hate anyway.)

I read you. And have no problem with poo stories. It’s just something that has come out of your child – and I do not think that it should bother us – we all produce that stuff! But then I am german and easy with those things. After all, hey, that is what washing your hands is for …
Americans have a special way with natural if unpleasant things. Or even with the pleasant ones like sex … 😉 Wrinkle their noses a lot about that. Or about the more harmless swearwords like “shit”.
Though I have to admit, when I have to clean up “the stuff” after my cats, I go “Eew”, too … Very special aroma …

Bug is the same way, when he’s at school, I grocery shop, clean house, do my own homework, and have a 2 year old. Once Bug comes off the school bus, it’s all about keeping him safe and entertained. He grabbed my big kitchen knife and yelled, “I’ve got my sword!” (Jake and the neverland pirates) one day. He got a maker and wrote his name on the wall… showing off his improving fine motor skills! Just as I was typing this he was standing on a chair, touching my hanging heavy antique mirror. 😕

I got no problems with poo stories–it’s a reality in my house too. But we recently started a system that seems to be cutting down on the amount (and smell). Since Maura is roughly the same age as my two, and they all three are vaulting unsteadily into puberty, I thought I’d pass it along.
1) put some cookies (or other favorite treats) in a lockable or hidden place
2) every time she goes in the toilet AND flushes (my girls forget that a lot) she gets to pick out a treat, no matter if dinner is 3 minutes away or not.
Oreos are making these adorable “Winter Fun” cookies that have red cream and 5 different designs on the cookie. Maddy particularly loves the penguin ones.
PS. Congratulations on getting to see Alan last night (not always an easy thing on a school night). I am SO jealous!

Yeah, finally got to say hi to the man! Of course, I was a bit of a babbling dork, but I also had an oncoming headache hitting me, so I shall blame that for the babbling. Miriam however, was adorable and perfect and poised and was totally geeked about meeting him 😀

Aye, he’s a deadly charmer all right. The first thing he ever said to me (in response to my stammering “Y-you’re A-alan D-d-doyle, aren’t-t y-y-ou?”) was “Indeed I am, love, & aren’t you the sweet one?”
I lost it right there, 17 years ago (has it really been so long? Jaysus–as he might say.)